The Blog

IDF is proud to announce that the Medicare IVIG Access Act (HR 1845) was signed into law today, January 10, 2013, by President Obama.

HR 1845 provides for a demonstration project to examine the benefits of providing coverage and payment for items and services necessary to administer intravenous immunoglobulin (IVIG) in the home for patients with PIDD. Medicare law contains a special provision for patients with primary immunodeficiency diseases to receive home infusions of IVIG under Medicare Part B. However, prior to enactment of the new law, Medicare is only able to pay for the drug but not the costs associated with the infusion of IVIG in a patient at home, thus rendering the benefit useless and effectively denying IVIG home infusions.

Without treatment, everyday illnesses like the common cold can put these individuals at risk for infection and more serious complications. Fewer than 10,000 Medicare patients with PIDD receive immunoglobulin therapy on a regular basis to replace the antibodies that their bodies do not produce naturally, allowing most to live healthy lives.

“There’s nothing more disconcerting for a physician than to have a treatment that’s effective for a patient, and then we can’t get it to them,” said Dr. Michael Blaese, Medical Director of the Immune Deficiency Foundation. “Now this legislation will make access for Medicare patients possible.”
HR 1845 was passed by a margin of 401-3 in the U.S. House of Representatives on Wednesday, December 19, 2012. HR 1845 then went to the Senate where it passed by unanimous consent on Friday, December 21, 2012.

“We are so grateful of the work done by Congress to pass this legislation,” said Marcia Boyle, IDF President and Founder. “After so many years of working on this issue, finally Medicare beneficiaries with primary immunodeficiency diseases will be able to access IVIG in the home.”

In the U.S., there are approximately 250,000 people diagnosed with primary immunodeficiency diseases, and thousands more go undetected. Primary immunodeficiency occurs in patients born with an immune system that either is absent or poorly functioning. There are more than 185 different types of PIDD, all caused by hereditary or genetic defects.

2 Comments

This law did nothing except make it possible for a doctor to effectively kick patients to the curb because they cannot pay for their facilities and their nurses. Those patients who have been receiving ivig and then went on Medicare because of retirement suddenly find themselves unable to take advantage of one of a few treatments that keep them moving and able to function somewhat. I wonder if anybody actually read the law and understood the effect and ramifications of it. God forbid if it was yet another bill that was tacked onto another one and it passed because it was a ‘tagalong’. My wife has MS and we found ourselves last Friday removed from the list of patients who can receive IVIG. She has been on this treatment for six years and it has kept her mobile and able to function, albeit at a reduced level. What were these so called ‘representatives’ thinking?

This law did nothing except make it possible for a doctor to effectively kick patients to the curb because they cannot pay for their facilities and their nurses. Those patients who have been receiving ivig and then went on Medicare because of retirement suddenly find themselves unable to take advantage of one of a few treatments that keep them moving and able to function somewhat. I wonder if anybody actually read the law and understood the effect and ramifications of it. God forbid if it was yet another bill that was tacked onto another one and it passed because it was a ‘tagalong’. My wife has MS and we found ourselves last Friday removed from the list of patients who can receive IVIG. She has been on this treatment for six years and it has kept her mobile and able to function, albeit at a reduced level. What were these so called ‘representatives’ thinking?